Eugenics

March 11, 2011

State Rep. Martin Harty resigned yesterday, facing outrage from constituents, colleagues and strangers over comments he made endorsing eugenics for what he called "defective people."

Harty, a 91-year-old Republican from Barrington and first-term representative, submitted a hand-written letter of resignation to House Speaker William O'Brien.

"I was just getting the hang of it some, but with all the slightly unfavorable publicity I've been getting the last few days I'll never be an effective lawmaker," Harty wrote. "Sorry my big mouth caused this furor."

O'Brien said Harty came to his office to personally offer his resignation. The resignation will become official today, and a special election will be held to fill his seat...

...Party leaders from both sides of the aisle cheered the announcement...

Lawmaker advocates eugenics

By Shira Schoenberg

A 91-year-old state representative told a constituent that he believes in eugenics and that the world would be better off without "defective people."

Barrington Republican Martin Harty told Sharon Omand, a Strafford resident who manages a community mental health program, that "the world is too populated" and there are "too many defective people," according to an e-mail account of the conversation by Omand. Asked what he meant, she said Harty clarified, "You know the mentally ill, the r#t@rded, people with physical disabilities and drug addictions - the defective people society would be better off without."

Harty confirmed to the Monitor that he made the comments to Omand. Harty told the Monitor the world population has increased dramatically, and "it's a very dangerous situation if it doubles again." Asked about people who are mentally ill, he asked, apparently referring to a lack of financial resources, "Can we afford to bring them through?"

Harty said nature has a way of "getting rid of stupid people," and "now we're saving everyone who gets born."...

Omand says Harty then stated, "I wish we had a Siberia so we could ship them all off to freeze to death and die and clean up the population."

Omand said Harty appeared to be serious. After Omand responded that his idea sounded like what Adolf Hitler did in World War II, Omand said Harty responded, "Hitler did something right, and I agree with (it)."

Harty told the Monitor he was "just kidding" about Siberia. He denied making the comment about Hitler and said it was Omand who brought up Hitler...

It takes a lot to shock me, but this article did. To be fair, the rest of the article indicates that Harty may be developing age-related dementia or possibly alzheimer's disease, so most of my outrage is targeted toward the voters who gave him the power to decide to stop funding programs for PWDs and toward the other republican representatives who are more than willing to write off these horrifying statements.

If he were just a wacky retiree I might be more forgiving, but the fact is that he is casting votes that will determine if mental health programs are closed or how much of the state budget is allocated toward services for PWDs. I agree with Laura Brahlek who posted to the AAPD fan page, "Those committee members who work alongside this man should be embarrassed and urge him to quit his post for health reasons."

December 24, 2010

In the second of her series to mark disability history month, Victoria Brignell investigates America's past enthusiasm for eugenics and the profound suffering this inflicted on disabled people.

In the decades following the publication of Darwin's Origin of Species, a craze for eugenics spread not only through Britain but through America as well. Overbreeding by the poor and disabled threatened the quality of the human race, American campaigners warned. Drastic measures must be taken to avert a future catastrophe for humanity.

Amid popular fears about the decline of the national stock, one of the main drives behind the formation of American immigration policy at the end of the 19th century was the desire to exclude disabled people. The first major federal immigration law, the Act of 1882, prohibited entry to any 'lunatic, idiot, or any person unable to take care of himself or herself without becoming a public charge.'...

...In 1937, a Gallup poll in the USA found that 45 per cent of supported euthanasia for "defective infants". A year later, in a speech at Harvard, WG Lennox argued that preserving disabled lives placed a strain on society and urged doctors to recognize "the privilege of death for the congenitally mindless and for the incurable sick". An article published in the journal of the American Psychiatric Association in 1942 called for the killing of all "retarded" children over five years old...

This year, the disability community is celebrating the 20th anniversary of the passage of the Americans with Disabilities Act (ADA), civil rights law that protects the rights of disabled people. Growing up in a post-ADA America has meant that many of us have had access to more opportunities than previous generations. We know if we had been born in 1967 instead of 1987 our lives would look completely different. We know the history of our people is tainted by eugenics, ableism, lack of access and the sting of low expectations. We recognize the work that has been done by disability movements over the last century to make the current lives we live possible. We are proud to be members of this vibrant, breathing, community.

Although the struggle continues, we recognize that the realities of disabled people look vastly different in many ways. With this in mind, we are requesting proposals for chapters in a book-length anthology to document this legacy and record the stories of disabled young people talking about what it is to grow up with a disability in this day and age.

Part One of our anthology will attempt to explore how a new generation experiences these age old challenges, affording a chance to assess how far we have really come. Part Two of our anthology asks disabled young people to identify what our struggle looks like now.

We’re seeking a diversity of perspectives and topics. A few questions we pose as food for thought:

What does it look like to navigate the medical system?

What is it like trying to find and keep a job as a young person with a disability today?

How are mental health challenges and psychiatric impairments approached by family members?

Do students still have to choose between support and inclusion?

What is the impact of pity and charity?

How do we survive the traumas we experience by people who say they are helping us, whether this is in schools, in doctor’s offices, our places of worship, or within our support systems?

How do people with less visible disabilities choose whether or not to disclose?

How has the nature of “passing” changed or not changed?

How do we fight eugenics, with its many faces?

How do we work with personal assistant services and our support systems?

How is disability portrayed differently in American society?

How are media, and pop culture representations of disability viewed by the new generation of young people with disabilities?

What do our relationships and sex lives look like?

How do we find community?

We are seeking creative non-fiction essays from young people with disabilities ages 13-30 (some flexibility will be available for compelling submissions from individuals slightly outside our preferred age range). People with all types of disabilities are welcome to submit. Speaking from personal experience is strongly encouraged. The intent of this project is to use personal voices to capture the experience of the new generation of young people with disabilities.

Submissions should range from 2,000 to 5,000 words. Please include your address, phone number, e-mail address and a short bio on the manuscript.

April 22, 2010

These cases turn my stomach. Below is an Afficdavit given by Nancy B. Alisberg of the Connecticut Office of Protection and Advocacy in the OPA's motion to intervene in an assisted suicide suit. She describes three cases where guardians and medical professionals decided to withhold treatment (including in one case, nutrition and hydration) from people with varying disabilities. OPA stepped in to reinstate treatment, and those individuals have recovered and are thriving. I know there is a lot of controversy around whether people should be allowed to end their own lives, but I can't imagine many people support the right to end someone else's life, someone who has demonstrated a desire to continue living. I try to imagine similar circumstances if the child or patient did not have a disability, and I am convinced those decisions would have been made very differently. Read below and judge for yourself.

3. As the Managing Attorney, my duties include, but are not
limited to, supervising staff attorneys employed by OPA and maintaining my own
caseload of cases.

4. In 2007 I represented a woman with a profound intellectual
disability who lived in a group home. She had a history of aspiration
pneumonias. Her physician decided that she would not recover from her
current aspiration pneumonia without the insertion of a feeding tube. The
physician was concerned that she might not accommodate the feeding tube
easily. The physician therefore recommended that my client be starved to
death by the withholding of nutrition and hydration. Her guardian, who
was her brother and lived in another part of the country, consented to the
order. The brother also signed a Do Not Resuscitate (“DNR”) order.
These orders were approved by the Department of Developmental Services (then
the Department of Mental Retardation).

5. When OPA learned of this situation, I immediately brought
a motion in probate court to begin nutrition and hydration, and to remove the
“DNR” order. The court granted my motion. The woman is now happily
living in a group home and has learned to live comfortably with her feeding
tube.

6. In 2008 I represented a 15 year old boy who had a profound
intellectual disability and was in the care and custody of the Department of
Children and Families. He had developed a severe yet treatable form of
leukemia. The physicians who were treating him believed that he would not
understand why he would “suffer” from the side effects of the chemotherapy, and
that he might lose some additional cognitive functioning from the radiation
treatment. They therefore felt he should not be treated and should be
allowed to die.

7. The physician’s position was brought to the hospital
ethics panel which supported the physicians. It was only because of the
intervention of the OPA and another interested advocacy organization that DCF
ordered that treatment be commenced. This young man is now in complete
remission and living in an adoptive placement.

8. In 2009 I represented a woman who has a brain injury that
was the result of a complication of a heart transplant. The woman lived
at a long term rehabilitation facility. The treatment providers at this
facility informed my client’s parents, who were her conservators, that she had
reached what they believed to be her maximum level of rehabilitation. Her
parents decided that she would not want to live with her level of disability,
and thus ordered that she receive only “comfort care.” That decision sentenced
her to death as it ended all routine anti-rejection treatment for her
transplant. My client expressed an unequivocal desire to live. Her
providers at the rehabilitation facility were aware of her choice yet they
implemented the parents’ orders. We were therefore required to obtain an
order of the probate court in order to restart the required anti-rejection care
to save her life. She is now thriving, acquiring new skills and in a
loving relationship.

9. As the managing attorney, I have also supervised staff
attorneys who have represented clients with intellectual disabilities who have
had Do Not Resuscitate Orders imposed by guardians or conservators or who have
been denied dialysis treatment for reasons related only to the level of their
disability. It is only because of the intervention of OPA and the probate
courts that the lives of these individuals have been saved.

First, it could be
that I am just paying more attention to these things, but I am getting the
feeling that these cases are on the upswing. In just the past few years,
the Protection and Advocacy offices in Illinois,
Wisconsin
and Pennsylvaniahave all had to intervene in these types of situations. I know of at
least one other state in which Protection and Advocacy has had multiple
occasions to intervene in attempted treatment withdrawal or withholding based
on disability discrimination. There's no reason to believe that the
problem is limited to those states...

Comment Below:How is it that people responsible for
protecting and preserving life can openly seek to end the lives of the
people they are responsible for by withholding basic treatment, food and
water? How do we defend ourselves when our lives are seen as worthless
and our wishes are ignored? I know the above stories are only a
drop in the ocean. Share your stories below. Do you know someone whose
treatment was withheld, whose voice was shut out, and whose life was
devalued by medical professionals, over-burdened family members or
guardians?

August 18, 2009

Handicap Is Not a Death Sentence and Should Not Be Treated as One"Futile" healthcare is in the eye of the beholder, and should be in the hands of the patientBy Laura Hershey

Laura Hershey of Englewood, Colo., is a national advocate for the rights of the handicapped.

When people discuss "end-of-life care," they often invoke scenarios meant to sound ominous: tubes, breathing machines, physical dependency. I'm not scared by those images, having lived for 46 years with increasing reliance on technological and human support. A ventilator aids my breathing. Personal care assistants bathe, dress, and feed me. I operate my wheelchair by blowing into a tube. And my life is far from over. Of course, none of us can know for sure, but I plan on being around for a while.

That plan has not always gone unquestioned. Tactless acquaintances have told me they would kill themselves if they became as disabled as me. More chillingly, the last time I was hospitalized for pneumonia, I had two different nurses ask if I had a DNR—a "do not resuscitate" order. I replied that I had come to the hospital to get better, not to die.

Unfortunately, that expectation of medical treatment can run up against physicians' opposing views and hospitals' rules. In dozens of states, laws allow doctors to unilaterally deny lifesaving treatments that they deem "futile," even if the patient or a surrogate decision maker wants care continued. Some people actually advocate this, as a way to ration healthcare—limiting the resources available to sicker patients, to extend basic care to more healthy people...

Who should make medical decisions? The individual in the hospital bed, with everything at stake? The family, with their complex and sometimes contradictory concerns about love, obligation, and money? The doctor, with a vested interest in achieving rigidly defined "successful" outcomes? Or hospital administrators, with one eye on the bottom line?

The situations that worry me most are those involving different definitions of "futile" and "effective..."

WASHINGTON,
DC – August 14, 2009 – Not Dead Yet, along with more than 40 other disability
organizations, including the American Association of People with Disabilities
(AAPD), has signed on to a letter to New York Times Magazine Editor Gerald Marzorati denouncing a July 15 article by ethicist
Peter Singer. Singer’s article argued for rationing health care by
denying treatments to people with disabilities based on the assumption that our
lives have less value than the lives of nondisabled people.

“For The New York Times Magazine to publish an article
calling for health care rationing that would discriminate against people with
disabilities one week before the anniversary of the Americans with Disabilities
Act shows how out of touch the leadership at The New York Times Magazine is,”
said Not Dead Yet President Diane Coleman. “Peter Singer is a sloppy ethicist
who should not be given a forum by a publication as credible as The New York
Times. His piece, published at a key time in the health care debate, gives
fodder to critics whose goal is to kill any reform by raising the specter of
government supported euthanasia.”

The letter, written by Stephen Drake, Research Analyst for Not Dead Yet, states:

“…This is Peter Singer’s
most direct assault on the value of the lives of people with physical
disabilities past the age of infancy that we have read. His policy proposals
allowing for the killing of newborns with disabilities and people with
significant cognitive disabilities are already well known.

While this is a bolder assault than we
have seen from Professor Singer in the past, it’s hardly surprising. What’s
surprising and deeply disturbing is that the NY Times editorial staff have
sought him out as a writer on more than one occasion...”

The coalition has requested the following of The New York Times
Magazine:

1. The NY Times staff needs to define and clarify its
understanding of disability as a basic human rights issue.

2. If the current stance of the NY Times is that the lives
of people with disabilities are, in fact, a drain on health care sources, it
should be stated on record.

3. Discuss training in the basics of covering disability in
news stories – beyond the “human interest” and “medical” angles.

4. Cover the difference between “analysis” and “appealing
to bigotry” in public policy discussions.

August 13, 2009

Good news! As of yesterday, Illinois Governor Quinn signed HB 2290 into law. It is now Public Act 96-0272. As of today, people with disabilities who have guardians are now protected by state law against unnecessary and unconsented forced sterilization. The law now says that if a guardian requests sterilization of a ward with a disability, there needs to be a review process and advocate for the person with a disability. To read about the bill, see http://www.ilga.gov/legislation/billstatus.asp?DocNum=2290&GAID=10&GA=96&DocTypeID=HB&LegID=44195&SessionID=76.

Many thanks to the advocates and groups that worked on this! The groups include: Equip for Equality, the ACLU, FRIDA, the Cook County Office of the Public Guardian, and many others. If you want to send a thank you note to the advocacy coalition, you can send it via Cheryl Jansen at cherylj2@equipforequality.org. I know that this is an issue across our country that concerns many people in many states.

This law stems from several Illinois based advocacy efforts, including an EFE review of sterilization laws in the 50 states and the FRIDA-coordinated campaign on the Ashley X case. Again many thanks to all of those who fight every day so that people with disabilities can be free of oppression.

August 06, 2009

From the JFA Moderator: The following letter was composed by Not Dead Yet in collaboration with the JFA Action Network with the first signers listed below. We are seeking additional signers. If you would like to add your signature to this letter to Gerald Marzorati, Editor of NY Times Magazine send your name and email to jfa@aapd.com by 12 noon EST Monday August 10, 2009.

Was it the New York Times Magazine’s intention to assault or diminish the basic tenets of the disability community's civil rights law virtually on the eve of its 19th anniversary? The New York Times Magazine’s decision to publish Peter Singer's latest long essay entitled 'Why We Must Ration Health Care' (7/15/09) less than two weeks before the anniversary of the signing of the Americans with Disabilities Act demonstrates either deliberate malice or reckless disregard of the reality of disability as an important demographic representative of nearly 20% of the American population.

As anyone who has read ‘Why We Must Ration Health Care’ knows, Singer spoke “hypothetically” of assigning a life with quadriplegia as roughly half that of a life without any disability at all. On this “hypothetical” basis, Singer lays out a case for denying health care to people with significant disabilities on the basis that our lives have less value than the lives of nondisabled people.

This is Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.

While this is a bolder assault than we have seen from Professor Singer in the past, it’s hardly surprising. What’s surprising and deeply disturbing is that the NY Times editorial staff have sought him out as a writer on more than one occasion.

To be fair, the NY Times Magazine has published some excellent articles in the past that have covered the disability experience as more than a mere medical issue. The late Harriet McBryde Johnson had several thoughtful articles published in the NY Times Magazine describing the historical oppression directed at people with disabilities, contrasted with the wonderful opportunities that unfold if that oppression is lifted. When Harriet died, many of us were taken aback when the NY Times Magazine editors passed over Harriet’s friends and colleagues to write an end-of-year tribute in the year she died. That honor was bestowed on Professor Singer. Perhaps we should have taken that as a sign of things to come.

Reluctantly, we have to suspect that the NY Times Magazine accepted this piece because of its content, agreeing with Singer that our lives have lessened value and that we represent a drain on the collective economic and health care resources of our country. It’s hard to imagine the NY Times Magazine green-lighting an article that targeted any other group in such a way – e.g. immigrants, the poor, or other groups who have been targeted as scapegoats in the health care debates. Did the editor in charge of publishing this issue even notice that Singer used no factual information at all to support his devaluation of people with disabilities?

We have to wonder what went through the heads of the editorial staff when they thought about the reactions of readers – with or without disabilities – to the large graphic that read “__ YEARS OF A NONDISABLED LIFE IS WORTH __ YEARS OF A DISABLED LIFE.”

Contrast this with Senator Edward Kennedy’s essay on the fight for universal healthcare in the current issue of Newsweek. Talking about people with disabilities he said, in part:

Social justice is often the best economics. We can help disabled Americans who want to live in their homes instead of a nursing home. Simple things can make all the difference, like having the money to install handrails or have someone stop by and help every day.

Obviously, the definitions of justice that Senator Kennedy uses are very different from the definitions favored by Peter Singer and the NY Times Magazine.

Without using the term, Senator Kennedy is also describing the social model of disability. In the traditional medical model of disability, the “problems” of disability are all situated within the person. The medical model defines people with disabilities as having a lower “quality of life” than their nondisabled peers. In reality, most of the limitations put on people with disabilities are socially defined – and can be remediated in the same way. The Americans with Disabilities Act is built on the principles of that social model, acknowledging that disability is a natural part of life and that society has to reflect that reality in an inclusive and supportive way.

The proposed treatment – or nontreatment – of people with disabilities also violates the UN Convention on the Rights of Persons with Disabilities, which was signed by US Ambassador to the United Nations, Susan Rice. She signed the Convention on July 30th at the direction of President Obama. While the Singer essay violates the spirit and vision of the Convention in numerous ways, the most pertinent section of the document is spelled out in Article 25 (f), in which obligates signatories to “prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.” This is important. Article 4(d) states that countries that have signed the Convention agree to “refrain from engaging in any act or practice that is inconsistent with the present Convention.”

The American disability community, Senator Kennedy and an ever-growing majority of the international community all recognize that public policy has to embrace the inherent equality of the lives of people with disabilities – and public policy must reflect that in practice. The NY Times Magazine and Professor Singer stand opposed to the more progressive voices of social justice, inside and outside of the United States.

We, the undersigned, protest this treatment of people with disabilities within one of the most important public policy debates in our time. The New York Times Magazine has failed in its public responsibility to treat citizens of the United States with the simple respect we deserve by serving up people with disabilities as a drain on public resources and to legitimize the denial of medical care to those of us who need that support the most.

The editorial staff of the New York Times Magazine needs to meet with representatives of disability advocacy groups, with the following goals:

1. The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.2. If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.3. Discuss training in the basics of covering disability in news stories – beyond the “human interest” and “medical” angles.4. Cover the difference between “analysis” and “appealing to bigotry” in public policy discussions.

July 10, 2009

During her announcement that she is stepping down and will not seek a second term as Alaska's Governor, Sarah Palin made the following comments about her son, Trig, who has Down Syndrome:

From the Wall Street Journal (July 3, 2009):

...I think much of it had to do with the kids seeing their baby brother
Trig mocked by some pretty mean-spirited adults recently.) Um, by the
way, sure wish folks could ever, ever understand that we ALL could
learn so much from someone like Trig — I know he needs me, but I need
him even more… what a child can offer to set priorities RIGHT – that
time is precious… the world needs more “Trigs”, not fewer...

These comments have sparked a flurry of debate around Palin, the Media, her resignation, their coverage and, yes, her children. For an excellent summary see

Everyone in the family was weary of endless personal
attacks, including mean-spirited suggestions on liberal blogs that all
of her children should have been aborted and that she would run on a
presidential platform promoting retardation."

Frankie Mastrangelo is the moderator for both the Justice For All (JFA) national email listerv as well as for the JFActivist blog. She is also an organizer for the American Association of People with Disabilities in Washington, D.C.